Thursday, February 10, 2011
Logged on here like I do every so often . . . just to see where I had been . . . and was shocked to realize that it had been a full year since I had written . Weird.
Maybe I will take it up again . . . clearly it was something I "needed" when I was sick and then dropped like a hot potato when I was well . . . . but now with some distance and perspective, might be fun to rant and rave above all kinds of things . . . .lots of possibilities . . . and I won't even have to change the title . . .truth is truth.
Wednesday, February 10, 2010
There are quite a few words in the cancer world that you don’t really hear much in other places—or at least, you hope not to. Words like: recurrence, chemotherapy, radiation, advanced disease, immuno-compromised, neutropenic, transfusion, stage four, and biopsy . . . just to name a few. There are a couple of words and phrases in this arena though, that are music to the ears of the cancer patient and their families. These words . . . words like: stable, benign, and remission, give you hope.
Another word that you hear all the time in connection with cancer is “cure”. As in “Race for the Cure”, “he’s so smart he could cure cancer”, “searching for a cure” “finding a cure” etc. etc. etc. But this is also a word . . . the “cure” word . . . that you will almost never hear from an oncologist. They just don’t trust it.
Today, my oncologist, Dr. Gary Frenette, said, “We will never call it that . . . we won’t say you’re cured, until you die of something else.” Both Jason and I thought that was hysterical and completely appropriate. We were in Dr. Frenette’s office to get the results of my “6-month” scans. Everyone I know from the cancer world dreads scan - week. It’s just so full of anxiety . . . and hope. Of course you want the scans, and you want to know the results, sort of . . . kind of . . . I mean, if it’s good, you want to know, but, if it’s not, then, well . . . not so much. Still, you have to go. And sometimes when you go, the words they say . . . make you cry.
Today, the words Dr. Frenette said were : NO EVIDENCE of DISEASE! Otherwise known in cancer speak, as N.E.D. The best damn acronym in the world if you’re a cancer patient. (It doesn’t mean cure . . . there might still be some cancer cells lurking around in there somewhere . . . but they couldn’t find any, and they looked in a lot of places!) And so I cried, and laughed, kissed my husband, and danced a little, smiled a lot, and cried some more, had lunch with Jason, went to a company meeting, came home and hugged the red-haired boy, said some thank you prayers . . . a lot of those, sat down and wrote this to you . . .and stopped for just a moment to think about the power of words, and how it is the little short ones like love, and hope, and n.e.d. that can change your life.
No, I am not yet done with the oxygen chamber (another week or so!) and the radiation necrosis is still a bit of a problem (it’s possible that it may require a graft or some other procedure down the road but that is yet to be seen.) Yes, there is still some pain, but it’s manageable. Yes, I will still have doctor’s follow up at least every 6 to 8 weeks and still take 5 or 6 pills daily (for a long time probably) but that’s not a problem at all. We won’t actually scan again until early August and if those scans look good . . . then we will go to a once a year scan schedule . . . and normal regular old follow up.
Monday, January 18, 2010
Tuesday, January 5, 2010
However, you can not possibly imagine how frustrating it is to have all these THINGS TO DO and then be isolated from doing ANY of them for 2 1/2 hours at a time. It's crazy. But I am going to learn to appreciate it. I am taking up meditation, and making mental lists, and counting my blessings, and remembering that it could certainly be worse . . . .and it is supposed to be REALLY good for your skin. (I am looking younger every day!) And when it's done, and the pain is gone, I might really believe that I am cured! Hell, I might even BE cured!
So,that's all for today. Thanks, as always, for your continued prayers. Please keep 'em coming.
Have an amazingly blessed day!
Thursday, November 26, 2009
If the only prayer you ever say is thank you, that will be enough.
(From the German theologian and humanist Meister Eckhart, and Oprah)
Friday, November 13, 2009
Wednesday, November 4, 2009
I just want you to know that the question/answer scenario above feels like a perfectly reasonable exchange of ideas when the person answering the question has had cancer. I understand from others that it abates some with time, but just now, paranoia is hard to reason with. Every twinge, ache or pain is analyzed and cataloged. The doctor is called (twice this week) and seen (only once!) Reassurances are offered, but not believed. The Internet is scoured for symptoms of recurrence. First, you want to find someone who has the same symptoms as you and who WAS having a recurrence, and then, you remember that in this particular case, it would be better to be WRONG and not have cancer, than to be RIGHT and to have proven to the medical profession that you know a thing or two about this disease! Good grief! Eventually you stop looking. There are a lot of stories and some of them do not turn out well.
There is however, at the moment, no reason to believe that mine will not turn out well. No more reason than there ever has been I mean. . . . which is to say that the scans looked pretty good and we will do them again in early February and then we will see.
This all got a little out of hand last week because my throat hurt. A lot. Differently than it had before. What to do? I had just seen the oncologist and he said the scans looked good. My appointment with the ENT was not scheduled until the 17th. But it hurt, especially when I coughed. Oh Lord, what now? Call the doctor! Insist that he fit me in! (Fine, Mrs. Todd come in right now!) Drive 30 minutes, wait 30 minutes, talk to the nurse, tell her every symptom I have had for the last 45 days and why this feels different! What do we do now?! More surgery?! Will they have to cut more into my tongue this time?! Gross! What about talking and swallowing?! Oh damn, I will have to get the tube back in. What if I can't talk? I should record my voice for Charlie. What should I record? I will read to him! What should I read? Maybe the Harry Potter books? Yes that's a good idea! Where was I? Oh yeah, my throat hurts. How can this be happening?! What are my options? WHAT DO WE DO NOW?
"Perhaps, we should just see what the doctor has to say."
Hmmm . . . . Not a bad plan.
Enter the DOCTOR. Asks several questions . . .where does it hurt? On both sides or only one? Any coughing? Nose running? Let's take a look. Peers around in my throat for awhile. Smiles benevolently. "Everything looks fine in there. . . . Mrs. Todd, . . . . .I think you have . . . .a . . . cold."
Another sweet smile.
At least he didn't pat me on the head.
"Since you came in today, I don't need to see you on the 17th of November, please schedule you next appointment for 8 weeks from today--the week after Christmas. Enjoy your holidays."
WHAT?! Are you kidding me? I don't want to wait 8 weeks, I want to see you every week! I want you to scan it every day and I want an affidavit signed in your blood that you are sure that it is not coming back. I know that this is NOT too much to ask. This is your job. Do it for heaven's sake. Why are you looking at me like I'm crazy?
Because you are crazy. Nuts. Certifiable, in fact.
By the time I got home, I was sure that he was just some quack who wouldn't know cancer from a hole in the ground (or in this case, from a cold). Let the Internet scouring begin! (sometimes you have to take a break to eat and pee and meet the school bus and talk to your boss about going back to work . . . .thank God, or I might still be there)
A week passes.
In that time we 1) decorate the house for Halloween (scariest one on the street complete with scary music and the fog machine! Awesome!) 2)develop a plan for going back to work (on November 9th, with full pay and my old job description! Yippee! ) 3) meet with Charlie's teacher (great report card!) 4) get things organized for Mom to visit and take care of Charlie while Jason and I are in Vegas (Nov 4-8, we leave tonight!) and 5) cry uncontrollably ALL the time, over tiny things . . .convinced that I am dying and that I will never get to use the fog machine again. HUH?!?!?
Wake up yesterday and discover that for the first time in 3 months . . . I have gotten my period.
Which sort of explains the crying, and the irrational behavior, and some of the paranoia, but does not, in any way, explain my sentimental attachment to the fog machine.
Great! Just when I am going away for a fun and romantic trip with my husband, I have a cold. . . and my period.
But, my ankle does not hurt.